Tuesday, February 19, 2008

Carly's Writings - A Child With Autism Tells Her Story

Carly's Writings - CTV News Photo

In Girl's writings opening new window on autism CTV tells the story of 13 year old Carly, diagnosed with autism at an early age and non verbal, who can now communicate very well with a computer. Carly surprised her family and therapists when she began typing words and then sentences. Carly was believed to be intellectually challenged. She is able to describe the frustrations she endures because of being different, in some ways, then other children, and because of her inability to express herself verbally. At the same time she describes very ordinary feelings for a child, including having "crushes" and describing "yucky" siblings.

The CTV article states that Carly's development of computer assisted communication abilities challenges conventional views of autism. That may be so, at least for some children with autism disorders. But Carly's story also challenges the anti-ABA, anti-treatment, ideology advocated by some prominent "autistics" and espoused by their neurodiversity followers. And challenges their rhetoric that all persons with autism want to remain autistic.

Carly's parents refused to "write her off" and instead obtained intensive ABA (Applied Behavior Analysis) intervention for her. Professionals, including autism specialist Dr. Wendy Roberts, who has read some of her writings and observed Carly on video, says that she is "certainly unique in her abilities and provides some fascinating insights into the condition of autism". Dr. Roberts also notes that "Carly possesses unique abilities that make her a rare case, or it may be that her early and intensive training simply drew the skills out." Her parents are very happy that they provided Carly with the benefits of ABA therapy.

CTV has also provided a separate page of Carly's writings which are fascinating reading. Some of what she says strikes me in many ways as similar to what I imagine my son Conor is feeling. I found her writings on stimming particularly interesting.

15 comments:

Thank You Carly!I have a Grandson with autism. He's 5yrs & is learning to talk.. Doing very well I might add. Carly, you have told me so much about his feelings & how his body feels, why he can't sit still. We have been working with him for 3 yrs... The school district has helped us so much! But reading your stories helps just as much. Keep telling everyone how you feel.That is more important then most things...I would love to talk to you!Thank you so much Carly. And ty to all the people that helped Carly tell her story on line & TV. Karen SiglerPortland, Or

Actually, this would seem to validate the central idea behind neurodiversity - that autistic individuals possess the capability to communicate effectively when provided the opportunity to do so in the fashion that is right for them. If we are to define the Augmentative and Assisstive Communication technology and even the educational interventions that Carly has utilized as "treatment", then we are not anti-treatment at all. The primary difference we'd have with the terms used in this article is the replacement of the term "treatment" with "support", as the services she receives do not make her less autistic; they simply provide her with the ability to communicate in a fashion that is most natural to autistic people.

Actually ari, Carly's story does NOT support Neurodiveristy ideology as you contend. You disregarded key informtion in the article.

Specifically the fact that Carly, who is now 13, has been receiving ABA treatement for years. Carly's parents attribute much of her progress over the years to the receipt of ABA treatment which Neurodiversity routinely rejects despite hundreds of studies documenting gains by autistic children like Carly from ABA treatment. Dr. Wendy Roberts also commented on that same point in the article.

Further the fact that one child has innate communication and intellectual gifts does not mean that ALL non verbal autistic children would display the same characteristics. As I am sure even a Neurodiversity follower can acknolwedge the current thinking, even apart from the distinctions between diagnostic categories such as Aspergers, PDD-NOS and Autism Disorder, is that it is more helpful to refer to Autism Disorders, plural, because of the wide diversity of characteristics of persons with Autism Disorder.

If ALL autistic children or persons with autism could communicate by computer then I might agree with Neurodiversity ideology.

This is an amazing life story! It reminds me of the solution that Stephen Hawking uses for interacting with the world. Though the diseases are different, the symptoms are similar in that they trap the mind within the body.

New technologies are emerging that are allowing the mind to interact directly with the machines we use everyday. Since one nature of this disease seems to limit the communication pathways, I wonder if the use of these devices might help unlock the chains the disease places on these pathways. I'm not sure if there has been much research into the usefulness of these technologies with respect to autism therapy, but it could be a possible accompaniment to traditional therapy methods (specifically with communication). The technoligies are just emerging, so perhaps now they are not quite ready, but something to look for on the horizon.

One item recently in the news is Emotiv's EPOC device (http://www.emotiv.com/). It is intended for gaming (not therapy)and mentioned here only as an example of EEG input devices. But, as cognitive input devices for computers evolve, their use in therpy is surely to become more accessible.

don't want to come off too heavy...but...a simple internet search shows the family is deeply involved in the issue, which is great.

But they are not objective.There are some flags here.

Also, if it costs up to $100,000 a year for each child to get the treatment, the companies providing this have a huge financial incentive here, 10 kids is $1 million gross.

So I am not accusing anyone of anything, of course.

But this is far from "proven".It appears the mom said on a blog somewhere she does edit the text, for spelling or something.

This is all very dangerous, as with new computer software its easy to create words.Even MS word does it, so does your browser...it inserts words from a database.

So they need to take Carly into a 100% independent research institute, and get her fully tested. This does NOT appear to have happened.

What if the software is doing this?

All they have to do is get the proper tests done, peer-reviewed, double-blind, and then the evidence will be in.

What if they don't do this?What if instead they just release a "book by Carly" and everything else, and its never proven for certain?

One could understand the frustration of Activists who want to get treatment funded. But the best way is to use the power of real science, and that means objective testing.With no objective tests, then there is no proof.So far, we have not seen any proof.Zero.

Dear Sweet Carly,So nice to meet you over the internet. My name is Cindy and I live in Atlanta Georgia with twelve poodles! If you would like to visit with my dogs visit my website www.highstandardpoodle.comI also wanted to thank you for all you are doing to help us to understand your experiences. The fire pain you describe sounds similar to what is known as phantom pain. My nephew has autism and he graduated from highschool with honors and he is now in college. He attends classes and takes classes on line! I can tell by the way you write that you are very smart! My poodles and I wish you the best! Best Regards from Cindy JonesPoodlefancier of Atlanta

I saw your story on abc tonight and was simply amazed. There is a 19-year-old man in our church with autism. I thought he was mentally handicapped as others thought you were. THANK YOU for telling people what it is like for you and why you do different motions and do not like to look at faces straight on. I believe now that he does understand way more than I ever thought...maybe he understands more than I think I do! Thank you again and keep up the wonderful work you are doing! God bless you.

my name is Maia Chung and I founded The Maia Chung Autism and Disabilities Foundation in April 2008 because my son Quinn is Autistic and I was scared for him so I decided to formalise my fight with that fear through the Foundation...my friends know about the Foundation so when Carly's story came about they all called me I saw her story and became inspired I gave Quinn who is nine the laptop yesterday September 4 2009 and he has already been typing words and a sentence "when Mommy gone Quinn cry" - I am so excited I think greater things are to come !!!!Thank you Carly and I must say that even before my life with Autism I never judged people as useless by their behaviours if they acted differently hang in there Carly many understand you journey more than you know we are glad too my Foundation that you broke ground the way you did you may be the catalyst for more improved care for the Global Autism community

My son has Aspergers and a number of other developmental challenges (severe dyslexia, motor delays, auditory processing delay, OCD, OD, etc) and the things Carly writes are exactly what he often says. He says things like "I wish I was like other kids. I hate feeling stupid because I don't understand things like other people do. I wish I could stop myself from (stimming) and I try to force myself, but it's really, really hard. Sometimes I have to (stim) because it just makes me feel better. Sometimes I argue with you and I don't even want to, and I am telling myself to stop, but I do it anyway. Then I go in my room and I think about what I just did and I feel bad because I know I was not right and you were. I need you to pet me/scratch my head because it helps my brain calm down. I don't like it when I don't know what is going to happen. I like my routines. I need more structure" (this because we homeschool and he was telling me he wants more strict and predictable structure in his day) "I hate myself because I am different. I wish I was like everyone else."

Thanks for sharing your own experience and feeling with us.My 8 years old son is an autistic, non-verbal child. My son was diagnosic autism when he was 2 years old. About 5 months ago, back in August 2012, he began to communicate with us thru. writting. For years I have been working with him, trying my best to teach him all the alphabets, math, cutting shapes, etc, without knowing that he could read & write fluently; is able to do maths (algebra/ geometric/etc.) and know many other subjects at far beyond his grade level.We filled with joys during these days...One week later during our communication, he wrote to us that he was verbally and physically abused (yelled at/ slabed at face/ pinched ears/ pulled hairs/ kicked) by sveral school staffs at school. He also wrote to us that he was not provided speech therapy by speech pathologist (was pulled out to the therapy room & left to sit there doing nothing & later took him back to his classroom). Being overwhelming/ upseting, we pulled him out of school...I beleive that " not being verbal does not mean that someone cannot communicate efficiently their thoughts and knowledge." However, it is brave to speak out and reach out to communicate to us either by writing or typing...

101 Noteworthy Sites on Asperger's & Autism Spectrum Disorders

Facing Autism on Facebook

Why ABA For Autism?

The effectiveness of ABA-based intervention in ASDs has been well documented through 5 decades of research by using single-subject methodology21,25,27,28 and in controlled studies of comprehensive early intensive behavioral intervention programs in university and community settings.29–40 Children who receive early intensive behavioral treatment have been shown to make substantial, sustained gains in IQ, language, academic performance, and adaptive behavior as well as some measures of social behavior, and their outcomes have been significantly better than those of children in control groups.31–4American Academy of Pediatrics, Management of Children with Autism Spectrum Disorders

"We have to look also at environmental factors, and from my point of view, the interaction between the genetic factors and the environmental factors ... It looks like some shared environmental factors play a role in autism, and the study really points toward factors that are early in life that affect the development of the child"
Joachim Hallmayer, MD, associate professor of psychiatry at Stanford University in California

Even Out Environmental and Genetic Autism Research Funding

Right now, about 10 to 20 times more research dollars are spent on studies of the genetic causes of autism than on environmental ones.

We need to even out the funding.

Irva Hertz-Picciotto, UC Davis M.I.N.D. Institute Researcher

My Autism Pledge For Conor

Today I pledge to continue;I Pledge to continue to fight for the availability of effective autism treatments;I Pledge to continue to fight for a real education for autistic children;I Pledge to continue to fight for decent residential care for autistic adults;I Pledge to continue to fight for a cure for autism;I Pledge to continue finding joy in my son but not in the autism disorder that restricts his life;Today, and every day, I Pledge to continue to hope for a better life for Conor and others with autism, through accommodation, care, respect, treatment, and some day, a cure;Today, and every day, I Pledge to continue to fight for the best possible life for Conor, my son with autistic disorder.

Dr. Jon Poling : Blinders Won’t Reduce Autism

"Fortunately, the ‘better diagnosis’ myth has been soundly debunked. ... only a smaller percentage of this staggering rise can be explained by means other than a true increase.

Because purely genetic diseases do not rise precipitously, the corollary to a true autism increase is clear — genes only load the gun and it is the environment that pulls the trigger. Autism is best redefined as an environmental disease with genetic susceptibilities."

We should be investing our research dollars into discovering environmental factors that we can change, not more poorly targeted genetic studies that offer no hope of early intervention. Pesticides, mercury, aluminum, several drugs, dietary factors, infectious agents and yes — vaccines — are all in the research agenda.